All About Makenna: 21-22 Month Update

 

Wow!  Makenna is 22 months old!  That means the next entry I write she will be 2 years old!  Everyday she says and does things to remind me that my little baby isn't really a baby anymore.  She surprises us constantly with what she can do and it is so fun seeing her really come into her own.  That being said, I'm glad we still have a couple more months with our one year old before she turns two, I'm not quite ready for that milestone just yet!  We have definitely been savoring the time we have with our one year old and enjoying the last little bit of time that we get to watch are "scooter" and listen to her constantly babbling.  I know it won't be long until the scooting and baby babbles are replaced with walking and talking.  Exciting to see her grown, but still so bitter sweet!

 

A couple huge things happened the last two months!  First ((drumroll please)) Makenna is officially sleeping through the night in her crib!!  It took a while to get to this point, but I can finally say she is completely sleep trained and night weaned!  She goes down at night and for naps without nursing, our bed, and without tears.  It is amazing!!! 

 

Another huge announcement in our house this month is that Makenna is going to be a big sister!!  We always wanted to have our kids really close together (two under two), but that just wasn't in the cards once we were dealt CDH and hydrocephalus.  However, now that things have settled down a bit we are so excited that they will at least only be 2 years and 4ish months apart!  

 

 

 

 

 

 

 

 

The last couple of months Makenna has been working really hard on her gross motor skills and her confidence.  She has always been a perfectionist and won't do anything until she can do it perfectly.  She hates practicing new things because she hates making mistakes. It keeps her from taking chances, trying new things, and mastering new kids.  She also thinks through her motor planning much more than the average kid her age.  When she approached a task (such as sitting down from standing), she thinks "what is the worst thing that could happen to me" and of the answer is "get hurt" she is extra cautious and unwilling to independently carry out the task until she is certain she is a pro.  Unfortunately she doesn't realize you can't be a pro until you practice on your own a good bit.  Thankfully the last few weeks she has developed a newfound confidence in herself and it has helped her develop several new skills!  It has been fun watching her try things and become more willing to practice her skills during the day!   She has started pulling up to stand on just about anything she can. 

She got up here on her own!!!

It isn't quite effortless yet, so she struggles a little bit, but she isn't letting it stop her from trying like she was before!  When she pulls up she will cruise the objects in the room with ease even if it involves rounding corners, turning around, or crossing empty spaces.  She has learned how to carefully lower herself back to the sitting position from standing (without plopping down...which was too scary for her to even attempt so she would remain standing until we rescued her) and she can slowly lower herself into the laying down position from sitting up as well (something else she never did until very recently)!  In the last couple of days she has figured out that if she pulls herself to stand on a low object (such as a stair), she can lift her leg and climb!  Today she climbed up two stairs!  Since she has never crawled, she has never been able to crawl up furniture or stairs, so seeing her climb is so exciting!!  Finally the last gross motor skill she has mastered this month is walking with push toys!  She can finally stand up on her own well enough to then walk with the toy.  Previously she would need to lean into the toy for support so much that it would fly out from under her before she had a chance to take a step!  This means she is one step closer to being able to stand up on her own.  So exciting!!

Fine motor skills haven't developed as much the last couple of months, but that is probably because she has been so focused on gross motor and speech!  She has learned how to hold crayons and markers correctly though.  Her grasp looks like a 4 year old, it's amazing!  She has mastered the pincher grasp and can pick up really small objects and put them in small holes with ease.  She also understands the concept of putting shapes in a shape sorter now, although we usually have to show her which hole the shape goes into before she will meet with success.  Another thing she has been working on for a long time is stacking.  She has never really been willing to practice (goes back to the whole perfectionist thing), but finally this month she has started to figure it out.  She loves to nest containers into each other and will put rings on a ring stacker.  She will also occasionally build small towers if she is in the mood.  

Speech the last two months has just exploded.  She must have somewhere close to 250 words at this point and she is really good at using her words to get what she wants, answer questions, and make observations.  She is constantly saying "I want ____" and "I need ____."  She will use words while playing such as "baby go night night" or "baby want bottle" and she will use words to get her way.  She is constantly telling us what she wants to do, where she wants to go, and what she wants to eat.  My favorite is when she says "I gotta scoot!" She answers questions such as "How are you?" with the word "good" and "What are you doing?" with "nothing."  I find some of the words in her vocabulary to be so funny.  For example she will say "daddies gone" "Sadie's lost" "I'm stuck" and "gross."  She is also very polite.  She says thank you without being prompted the majority of the time and will say "bless you" on her own if she hears someone sneeze.  She also used words to tell us when she needs the potty, which has been helpful!  She still loves to sing and is constantly singing "happy birthday" and "amazing grace" and she also understands pretty much everything we say.  We can ask her to bring us items, hand us stuff, or complete simple tasks and she will understand what we want and do it.  She still does a great deal of babbling as well, but you can tell it all makes sense to her.  Everyday her babbles contain more and more real words. It is just so incredible and rewarding to watch her learn our language.  I know her advanced vocabulary is all thanks to how much we talk to her and the number of books we have read to her every day of her life (at least 5 books a day, usually more like 10+!).  It feels great to know that we are developing a child with a broad vocabulary and a love of books.  As a teacher I know that is going to be her saving grace as she enters elementary school with some delays.  

And then there is feeding!  If you read back to a year ago you would see a chubby little baby who was obsessed with foods.  She loved fruits and veggies and while cautious in most things, was an unusually adventurous eater willing to eat just about everything we gave her!  Well fast forward to a few months ago and our little eater became a picky eater.  Or really just not an eater at all.  In the course of a day she would eat a piece of pasta, a cracker, and a bite of chicken.  It was scary and so unlike her.  At first we blamed the fact she was so sick, but even after getting better her appetite didn't improve.  She lost a pound in two months, which meant she dropped from the 50th percentile to the 3rd.  Scary!  Finally a couple weeks ago we tried lowering her reflux medicine dose and just like the time before, that seemed to do the trick!  Her appetite came back!  Although she still refuses to eat any fruit, veggies, or any type of milk.  She has started to wean from nursing (only nursing for comfort) and because she refuses milk, her nutritionist is worried about her calcium intake (she can't take calcium supplements because of her dairy and corn allergies.). She's started seeing a new feeding therapist and they have upped her to twice a week, we are hoping her issues with food can get figured out soon.  Thankfully she loves pasta, rice, chicken, and pizza.  She is a big meat and carbs kind of kid.  So she is back to eating, we just need to work on balancing her diet a bit more and making it more healthy.  She has also learned words for a lot of foods, so she will constantly tell us exactly what she wants to eat.  It is so cute and very nice not having to guess, but it gets tricky when we don't have what she wants!  She has even started getting more specific telling me she wants "hot chicken" (I gave her cold chicken from my salad once...oops!) and "sauce."  It's so funny!   Drinking wise she still chokes on water and refuses milk, but she will drink apple juice.  For a long time she was only drinking 1-3 ounces a day out of a cup and now she is up to 10-15!  Huge improvement, although they want her closer to 30 ounces (including fluid from food) a day.  I'm just happy she is drinking from a cup.  When she was younger I always said I would never allow her to drink juice, but now I don't care.  She can drink whatever she wants as long as she will drink!    She can also eat whatever she wants.  If she requests pasta for breakfast or cookies (fig newtons) for snack, that is what she will get. Right now our mission is strictly keeping her hydrated and getting some weight back on her body.

Health wise the last two months have been kind of crazy.  The ear infection she had in the last entry was really stubborn and refused to go away.  She did 17 days of antibiotics and it was still raging.  They ended up giving her antibiotics shots for three days in a row and that finally knocked it out!  Stomach bug, strep throat, sinus infection, and a 3 week ear infection all within 5 weeks!  She also cut two of her two year molars and three other teeth, so now she is up to 14 teeth!  Poor girl had such a rough time!  We also went back to Gainesville for check ups with neurosurgery and pediatric surgery this month (19th return trip in 22 months!).  They did a chest x-Ray and Makenna was a champ.  She sat still without going in the tube and didn't cry at all!  This was a relief for me because since I am pregnant I wasn't able to go with her this time.  It was the first scan (minus in the NICU) that I haven't been by her side, so I was thrilled she handled it well!  The x-Rays looks great and Dr. Kays was impressed with how well she is doing over all.  He wasn't thrilled that she isn't walking yet and was concerned with her weight drop, but said he knows both will come with time.  Neurosurgery was also all positive.  They didn't have to do a MRI since she had the emergency scan in May, and said she won't need anymore MRI's unless we fear her shunt has malfunctioned.  They also said clinically she looks good and cognitively she was developing wonderfully!  They were beyond impressed with how good she looks.   All good news during that trip, which was amazing, and to make things even better both pediatric surgery and neurosurgery said she doesn't have to come back for an entire year!  She has been going every 1-4 months since discharge from the hospital, so this is super exciting news that means she is finally on a healthy/stable CDH and hydrocephalus schedule! 

So there you have it!  Makenna continues to grow and develop everyday.  She is meeting and exceeding expectations and doing incredible.  She is a sweet, social, talkative, engaging, smart, funny, and beautiful little girl.  We love her to pieces and can't wait to see her step into the role of a "two year old" and a "big sister" over the next months.  Despite all the craziness that was outside our control, she makes being a mom rewarding, fun, and exciting.  I'm blessed to have her in my life and thank God everyday for the gift of time.  Half of all CDH parents had this time taken away from them.  I am so thankful for every day...hour...minute...and even second I get to spend with her.  I know so many parents would give anything for one more second and I am determined to never take a single moment of her sweet life for granted.  

 

 

Height:  32 inches

 

Weight:  20 pound 12 ounces
Eyes:   Brownish-green
Hair:  Light brown, getting curly, and very long!
Clothes:  12-18 months
Diapers:  Potty trained!
Food:  She also likes noodles, meat, pizza, rice, pea crisps, salad, and quinoa
Sleep:   Finally sleeping through the night!!!
Shoes:  size 3
Favorites:   Makenna loves markers/crayons, Frozen (Anna), keys, remotes, Sadie, and books!

All About Makenna: 19-20 Month Update

The last two months have been eventful and full of great growth! Makenna has learned so many new skills and her determination amazes us everyday!

One of the biggest area of improvement has been in her gross motor skills.  She has figured out how to cruise furniture, can lower herself into the seated position, and can pull herself into the standing position (while holding on) on a few select items around the house.  When she is scooting she has also started to put her hands on the ground and bare weight at times, as if she is trying to crawl.  Another exciting thing she has been doing is sitting up from a laying down position on her own.  She has been able to do this for a few month, but until recently she would always get so frustrated she was laying down that she forgot she could sit herself up!  She also can take a few steps while holding onto her push toy and a lot of steps if we hold her hands or under her arms.  She also learned that she needs to roll on her belly and slide off of furniture to get down.  Sometimes she has a little trouble with the execution and wants help, but she definitely knows what she needs to do now!  In general she just seems less afraid of getting hurt and more willing to try new things or take chances.  Every now and then she still stumbles a little (without falling down) and bursts into tears.  The idea of falling or the feeling of not being totally stable still really freaks her out.  In general though she is more daring and using her body a lot more.  

 

 

The other huge area of improvement lately is her vocabulary!  Makenna now clearly and correctly says over 85 words.  She will have simple conversations with us and answer questions.  For example, one day she scooted to me and said "up."  I picked her up and she said "more" I said "more what?" and she said "books" and pointed to her book cabinet.  She loves naming things she recognizes (owls, keys, phones, lights, baby, etc) and uses words to ask for things she wants (juice, eat, markers, walk, fork, up, down, cracker, snack, night night, etc).  She uses words to tell us when she is "all done" or wants "more" and also uses words to identify people she recognizes (mommy, daddy, papa, and grandma).  She says "thank you" (usually without prompting) when we give her something, "oh no!" (While putting her hands on her head) if something crazy happens, "aw man!" if something is disappointing and "yay" (while clapping) if something is exciting.  She also understands just about anything we ask of her or say to her.  
If we ask her where something specific is located in her environment, she will point or look at the correct object, even if it is obscure.  If she is in the mood, she will follow simple commands (go in the box, look up, take a bite, hug the baby, blow a kiss) or retrieve/hand over objects when asked.  She says "no" if she doesn't want something and loves replying "maybe" when asked a questions.  Also if we say something to her, she loves asking "why?" and genuinely wants and waits for an explanation.  She says "cheese" when we hold up at camera, "stop" if we are bothering her, and "down" if Sadie tries to jump up on her while eating.  She can identify just about every body part, including less common ones like thumb, tongue, knee, elbow, and teeth as well as articles of clothes (shirt, dress, sock, shoe, bow, pants, undies, etc).  She also has begun learning her shapes and will correctly identify circles, squares, and triangles when asked and she knows several animal sounds (moo, woof, meow, quack).  This month when I was leaving the room I said bye to her and she said "Bye! Love you" and when we were leaving a hotel room I told her to tell the room bye-bye and instead of saying bye, she said "See you later."  She still loves music and books, so she definitely gets a lot of exposure to language.  I just love it!  She is a talkative and very social, outgoing little girl!  She wants to play with everyone and be everyone's friend.  Everyone always comments on how verbal and precocious she is.  She just makes everyone smile and is a great reminder that life truly is what you make it!  She may have been dealt a difficult hand, but she is a happy, funny, and vibrant through it all!

Her fine motor skill development has slowed down the last two months while her gross motor and vocabulary took off.  However, she has begun doing simple shape puzzles, she loves drawing with crayons, and she is getting a little better at eating with utensils.  She demands a "fork" at every meal, so she is motivated to practice.  So far she still has trouble scooping, but can get it to her mouth once the food is on it.  She still refuses to stack blocks, but she loves putting lids on water bottles and containers.  She is likes playing in the Pyrex cabinet and is actually pretty good at figuring out which size lid goes with which container!  She also knows the purpose of many common items (phones to ear, hat on head, shoes on feet, brushes hair, glasses on face, etc.) and she is learning to pull her undies up on her own (kind of tricky since she can't stand up on her own yet).  

The main struggle this month has been with food and drinks.  Makenna still has a lot of texture/sensory issues when it comes to food.  She doesn't like anything sticky, slimy, or wet.  She doesn't like her food to touch...she hates dips, sandwiches, or mixed veggie type things.  If you try to sneak anything into her rice she will literally pick out ever last piece.  She is also very picky about not wanting the same foods more than once every few days, so a food she loves for dinner, she will absolutely refuse to touch at lunch the next day.  However, if we find the perfect foods for each meal she will eat great.  Best of all, she loves healthy foods! Salad is a definite favorite as well as pizza with tons of veggies (no cheese).  She also loves avocado, broccoli, rice, watermelon, most meats, and quinoa.  She doesn't like junk food.  Drinking remains a nightmare.  She refuses to drink out of any cups or bottles most of the time.  On a good day will take a few sips (totaling less than half an ounce) and she still tends to choke when drinking fluids, no idea why.  She still only wants to nurse.  Unfortunately, nursing just isn't going to be an option forever and I can tell it isn't enough to satisfy her at this point. It is a constant source of stress and a battle everyday.  Worst of all because she isn't drinking/eating enough during the day she is waking up wanting to nurse as many as 10 times a night.  Even when she doesn't get what she needs, she still refuses to take bottles/cups.  I really don't know what to do and none of the experts do either.  Everyone says it is behavioral, and I know it is, I just don't know how to change it.  

 

We met with a great nutritionist this month to discuss everything because she has only gained 14 ounces in 8 months.  They said they want CDH babies to be in the 30th percentile because the more they weigh the harder their lungs have to work.  Makenna is currently in the 30th percentile now (she was on the 70th at 12 months old), so they are thrilled with her weight and not concerned that she thinned out.  They just want to make sure that she doesn't continue to fall percentiles.  They want her to gain appropriately and maintain the 30th percentile from here on out.  To do that he wants us to start fortifying her food with coconut oil and avocado.  He said that way even if she doesn't eat much she is still getting some extra calories. 

Medically we had quite the scare this month.  On May 13th at 4:30pm she started throwing up with no signs of a fever or illness what-so-ever.  After the sixth time in an hour we raced her to the hospital for fear of a shunt malfunction.  They agreed it looked like a classic shunt malfunction, but since they weren't qualified to care for her, they decided to send us back to Shands.  They did some blood work to rule out infection and hooked up an IV for fluids.  Due to the time of day and nature of her condition it was decided that Makenna would be best off taking a jet.  We waited for a couple of hours.  By the time the ambulance arrived (10pm) to take us to the airport, she had thrown up over 20 times and was exhausted.  Once at the airport she and I were loaded onto the jet and headed for Shands.  It was her first ever ride in a plane.  It only took 53 minutes to get there and then we had to take another ambulance to Shands.  We got to Shands at 1am and they did an MRI, an x-Ray to check the shunt tubing in her belly, more blood work, another IV, and a shunt tap.  For the shunt tap they had to stick a thin needle through her scalp and into her shunt (while she was awake).  They took out some of her spinal fluid to check for infection.  Thankfully the MRI showed her ventricles were slightly smaller than before, her shunt tap was clear of infection, and the shunt tubing looked good. They did another X-ray to check for a bowel obstruction and a urine test for a uti.  Thankfully this time Makenna is potty trained so the urine test was way less traumatic!  All in all everything kept coming back negative for issues.  From 1am-8am we were in the ER while they ran the tests.  We were all exhausted from no sleep and every time anyone entered the room Makenna got so scared they were going to mess with her again that she would cry if they looked at her and throw up if they got close to her.  By 4am we were up to 30+ throw ups and they decided not to allow her to nurse anymore in order to give her belly a rest and incase surgery was needed.  Great in theory, but nursing is her primary source of comfort.  She doesn't take a paci or have a special blanket/stuffed animal.  She was scared and wanted to nurse.  It made her upset that she couldn't and it got her even more agitated than she already was.  At 8:30 they decided to move her to the pediatric floor and put us impatient.  This was nice because she was finally able to snuggle up in a bed and rest without being messed with as much.  They still came in every 3 hours for blood pressure/temperature checks.  Every time they did, she would see them and get so upset she threw up.  After the first 12 hours we requested that they please stop taking her blood pressure.  She was so worked up that the numbers weren't accurate anyway.  On day two of her stay the poor girl developed a nasty cough and her voice was so raspy she could barely talk.  It was really pitiful.  They decided she just had a stomach virus and her voice was raspy from all the crying and throwing up.  After four days we were allowed to leave!  Unfortunately I got sick in the hospital and the day after we got home (Sunday) we discovered I had an upper respiratory infection.  I was coughing and sounded raspy just like she did, so Monday we took her to the pediatrician.  I was afraid she would have something in her lungs, but it turned out she tested positive for strep throat instead!  Poor baby!  We aren't sure if she had this the whole time or if it was picked up in be hospital, but she got an antibiotic shot and was all set!  A week later she was still coughing and developed congestion.  I brought her back to the pediatrician and we discovered she had a sinus infection and an ear infection!  What a crazy month!!  Makenna had never been sick in her life (well besides the whole CDH/hydrocephalus thing).  Never even had a runny nose!  Although in three weeks she had a stomach bug, strep throat, a sinus infection, and an ear infection!  What can I say...she is all about doing things with a bang!!

 

This month we also did her follow up skin test for allergies.  It was definitely much better than the first and her back didn't have big welts this time!  It was so great to learn she has begun growing out of her allergies.  She use to be allergic to corn, dairy, soy, eggs, carrot, apple, and wheat.  Now she is allergic to dairy, soy, corn, and dogs (a new one!).  Although the first time we tried giving her egg yolks and she broke out in a rash.  They want us to hold off introducing the foods again until she has a blood test for the allergens to be extra safe.  

 

 

Final medical thing this month is that we switched her to a new reflux medicine (again!).  The first one (Pepcid) didn't work, the second one (Prilosec) was too expensive, third one (Nexium) made her stop eating, then we went back to Prilosec, and now we've settled on Protonix, which has been working great!  Hopefully it continues to do a good job!  

 

 

Height:  32 inches

 

Weight:  21 pound 14 ounces

Eyes:   Brownish-green

Hair:  Light brown, getting curly, and still shockingly long!

Clothes:  18m and 2T.

Diapers:  Potty trained!

Food:  Still loving her mommy milk! She also likes noodles, meat, pizza, rice, pea crisps, salad, and quinoa

Sleep:   Still getting up many times a night. 

Shoes:  Just barely fits size 3 shoes.

Favorites:   Makenna loves markers/crayons, ducks, Frozen (Anna), keys, remotes, Mr. Potatohead, her Dr. kit, and books!

 

 

 

 

All About Makenna: 17-18 Month Update

Makenna is officially 18 months old!  I cannot believe it has already been a year and a half since she made her crazy entrance into the world!  The last year and a half has been filled with so many ups and downs.  However, with all the craziness I can honestly say we are finally to the point now where we have more great moments than scary ones!   Finally at 18 months hospital visits and trips to Gainesville are no longer a monthly (or bi-monthly) occurrence.  She also no longer needs to go to the pediatrician every week (now she goes once a month for her synagis shot and about once or twice a month for a check up or follow up of some sort).  She still gets PT, OT, Speech/feeding therapy for an hour each week though, so we stay little busy with those types of appointments.

For the last 18 months Makenna, Rex, and I have worked so hard to fight delays caused by the brain atrophy from ECMO/hydrocephalus and the extended NICU stay.  Many times a day we go into her school room and practice her gross motor, fine motor, and speech skills.   In the last two months I have really seen our efforts start to pay off.  She is more vocal and really enjoys playing with her educational toys. I don't think she misses light up, plastic, talking toys at all.  She seems perfectly content with her simple wooden toys that require manual manipulation!   I am definitely loving the impact that the Montessori method has had on her learning the last few months!!


Gross motor skills have always been her largest hurdle; however, the last two months she has definitely made great strides.  She has started attempting to pull to a tall kneel every so often.  It is very difficult for her and she is only occasionally successful, but she definitely has the desire to reach higher surfaces!  She also rolled from tummy to back for the first time this month and has really improved at standing up (while holding on).  She no longer needs to lean her body against the surface and she will let go with one hand to reach and play.  She has even begun to lift up her foot and has taken a few side steps on her own while standing.  Also, if we hold her up under her arms she will take steps and walk across the room.   I really think cruising is in her near future!

One exciting fine motor skill she has learned the last two month is drawing!  She loves using her crayons, markers, and magna doodle to scribble her art!   She also learned to identify some body parts.  She can find nose, eyes, hair, belly, mouth, and feet on herself and others.  She will put things in buckets, turn pages in books, throw balls, and roll cars around.  She still refuses to build with blocks or do puzzles, she will do them occasionally, but the concept just doesn't really make sense to her yet.  This month I also used ball pit balls to help her get over her fear of the bathtub.  She played in them for a couple months, until I finally added some water and removed some balls.  I kept adding more water and removing more balls.  Now she will finally take baths without the balls in the tub! 

Feeding has been our major focus over the last few months.  She is getting a little bit better with spoons (still prefers her hands); however, she adamantly refuses to drink from a cup of any type because when she does she tends to choke.  We attempted to do a swallow study to determine if she is aspirating.  During the swallow study she sat in front of an X-ray machine and was supposed to drink different thicknesses of liquids.  Unfortunately she refused to put any liquid in her mouth (not surprising since she always refuses) and they couldn't get any useable information for us.  At this point despite our every effort, and the efforts of her speech therapist and Occupational therapist, she only nurses for fluid.  She will burst into tears if she sees a cup or start kicking and pushing the cup away.  She also refuses to eat most fruits and veggies because of sensory/texture issues, so we are working through that as well.  In general I just keep preparing well-rounded meals for her and have come to the realization that unless it is meat, bread, rice, or quinoa it will probably end up in the trash.

Her speech the last two months has really exploded!  She can say roughly 30 words and enjoys singing too.  She can sing Amazing grace and Let it Go.  She is more aware of her daddy leaving for work and is more interactive during FaceTime calls.  She also follows simple commands such as "get the ball" "come her" and "put that in your mouth."  We have decided not to use the word "no" with her, so she also has learned what "hands off" means and is pretty good at following directions.  I can tell she usually understands what we are saying.  She can say the animal sounds for duck, dog, and cat and she can say the words --- up, go, more, mine, dada, mama, mom mom, papa, walk, bye, hi, apple, bottle, nurse, cracker, duck, no, eye, night night, bow, owl, bird, stop, why, bubble, Olaf, and rice (might be forgetting some).

 

Not much has changed medically over the last two months.  She still wakes up and wants to nurse constantly throughout the night.  We switched her to a more powerful reflux medicine and that seem to be helping a little since she no longer wakes up crying, but she still wakes up.  Neurology has prescribed light therapy to help with sleep.  , We began sitting her in front of a special light box for 30 minutes each morning.  We are starting that yesterday, so no idea if it will help!  Finally the last change this month is that we need to switch to a new OT/Speech clinic.  Ours is no longer covered by Early Steps and is out of network for our insurance.  Unfortunately the only other option in our area is 30 minutes away and doesn't provide in home therapy, which means exposing her to the germs of a clinic environment and spending a lot of time in the car.  I'm in the process of fighting to get our insurance to do a reconsideration and consider her current therapy in network so she can stay put and continue getting therapy in house!  Hopefully it will work!  Finally she had an ophthalmologist appointment this month and they confirmed her eyes are still doing well.  Her prescription hasn't changed and the fluid from hydrocephalus appears not to be putting pressure on her eye muscles!  Yay!

Overall the last two months have been rewarding, exciting, and exhausting.  We are so grateful to have this wonderful little blessing in our lives.  It amazes me how far she has come and how much our lives have changed in the last year and a half.  I hear so often that people don't know how I do it, don't see how I am able to stay so positive or how I keep from going crazy being home so much...but it is simple.  I do it for Makenna.  I do it because I love her and I know what it feels like to almost loose her.  I do it because I want her to have the best life possible and the brightest future imaginable.  I don't want anyone to ever have any reason to put limitations on her or to ever tell her she "can't" do something that she wants to do.  I don't want to look back in a few years and have regrets.  I want to know that in these important formative years that we did everything in our power to help her succeed.   I want to know that we gave her all the help, time, and resources she needed to reach her full potential.  I am proud of Makenna, Rex, and myself for all that we've accomplished together as a family.  Now that we have 18 months down, I can't wait to see what the next 18 years have in store for us! 

 

All About Makenna: 15-16 Month Update

The last two months have been a time of incredible growth and relaxation!  We didn't have any medical scares or hospital visits and finally just got to enjoy our sweet girl without any worries for the first time ever.  It was pretty incredible!

During these months she has definitely become a full-fledged "toddler."  She is growing up so fast, some of her adorable baby chub is starting to slim down, her neck is now visible, and she has started to grow into her head nicely.

The most surprising thing she has done the last two months is potty training!  When she was 15 months old she found a little potty in the cabinet that I bought on clearance for $4 before she was born.  She pulled it out and for whatever reason I decided to sit her on it.  After a minute I said "That was fun practice huh?!" And picked her up.  Much to my surprise...she pooped!  I decided to try it again an hour later, and same thing, she peed!  Two days later she was is officially in undies all day (even for naps) and typically only has 1 or 2 accidents a day (if any at all).  I still can't believe I haven't changed a poopy diaper/undies in over a week!  She is  amazing.

 

 Physically in other ways she is still quite delayed, but has been making great strides everyday.  She is a master booty-scooter and has no trouble getting around that way.  She loves exploring cabinets and opening/closing doors.  Some people might want to keep their kids out of cabinets, but I love that she is interested in discovering her environment.  I started to hide treasure baskets in some of the cabinets for her to discover.  She loves it!  She has definitely mastered rolling from back to front (still not able to roll front to back) and she can stand solidly while holding on to surfaces. She can hold on with one hand while playing and she can go from sitting on a low stool to standing on her own as well (holding on to furniture or us in front of her).  She still can't stand on her own, cruise furniture, crawl, or walk while holding on to toys.  She also can't really go from lying down to sitting up yet.  She did, however, manage to go from lying on her belly to sitting up once yesterday for the first time ever!  We are very excited about that, even though she did it by backing into a W sit (a huge no-no), at least she got herself up!      Hopefully she will master that skill this month!  Getting around has also given her a love for Sadie (her dog).  She loves chasing her around the house and really wants Sadie to love her too.  Sadie is still trying to pretend Makenna doesn't exist.  Makenna loves feeding her food and will purposefully play with the Sophie the giraffe because she knows it will make Sadie come up to her.

Her fine motor skills have really taken off the last two months.  We turned the small office off of our living room into a Montessori school room and it has been wonderful!  Everyday Makenna and I "go to school" and I get to put my 10 years of Montessori experience and my teaching degree to good use!  I never knew why I felt lead to become certified in special Ed, but now I know!  I have a curriculum we follow each day and it has been fun teaching her and watching her learn.  She loves learning.  She can now put things in baskets and loves to clean up!  Sometimes I will catch her putting her toys away (not in the correct location of course...think blocks inside cars and balls in the cloth diaper basket), but still impressive.  She can also drop small beads into small openings (I.e water bottles), more or less use a spoon to feed herself (still prefers fingers!), and is really good at turning the pages in her books.  She still loves books more than any toy and spends a good part of each day reading herself and being read to.  We have books stashed at her level all over the house.  She also loves playing with her flash cards and making music with her xylophone/piano.

 Speech wise she has really come a long way as well!  She can say mom, mama, dada, hi, bye, no, go, walk, duck, more, and banana.  She has also repeated several of words such as lemon, yellow, red, Kenna, and Sadie, but they aren't a part of her vocabulary as of now.  She still uses sign language for words such as more, all done, hi, bye, no, I don't know, want/give, and occasionally yes.  She also knows the meaning of a lot of words she can't say, such as potty, night-night, dog, eat, nurse, outside, shirt, and shoes, and she knows how to signal when she wants certain things by pointing, such a certain toy, to nurse or to sleep.  She knows to tap our backs or legs to get our attention and can identify "nose" and "ears" on other people. She can respond to a few simple commands such as "give it to me" "blow kisses" "clap your hands" and "put that in the basket."  Best of all she is starting to make connections and transfer knowledge.  For example I was reading a book that said "Monkeys drum" and she turned around and pointed to her monkey flash card when she heard the word.  Another book said something about a shirt and she reached out and grabbed my shirt.  Today she picked up the bird puzzle piece and I said "bird" and she turned and pointed to the sky out the window.  Little things like that prove to me that she is understanding more than we may think sometimes.  Another thing that tells me she understands more than we may think is the fact that she finds things that are out of place funny, such as socks on our hands or toys on our head.  She also has a humor of her own.  Anytime Rex says "Say Dada" she will say "mom." He says "no dada!" And she smiles and says "mom mom" they go back and forth....over and over and over again.  She thinks it's a fun little game.

 Another skill she has acquired these last two months is the ability to help us when she is getting dressed and undressed.  She will stick her arms through the holes, lift her legs for pants, offer a foot for socks, and tilt her head down to make it easier to get the shirt off.

When it comes to food she still has so many allergies that it makes feeding her rather tricky.  She has also become a rather picky eater since the majority of foods she loved, she can no longer have.  She also doesn't like foods that feel slimy or squishy, which eliminates most fruits and veggies.  She is a huge fan of meat, quinoa, basmati rice, rice pasta, watermelon, and snap pea crisps.  Not exactly the food of Champions, but we do our best to offer her a large variety of healthy, organic, fruits and veggies every day, even if she doesn't choose to eat them.

 

 Quick medical update:
 We went to Shands for check ups with pediatric surgery and neurosurgery.  Both said she was doing great.  Neuro said she is still at risk of a shunt infection until September, but not to stress over that fact and Dr. Kays say her ASD hasn't fully resolved like they initially thought, but it is minor and not to worry about that either.  She will get another echocardiogram at 3. Thankfully after 14 trips to Gainesville last year, we won't have nearly that many this year!  We don't have to go back to Neuro until July and Peds. until October!  Yay!

 Other than that she is now on a "normal" pediatrician schedule (no more weekly appointments to measure her head--yay!!) and other than her monthly RSV shots we have been working hard to keep her healthy and out of doctor offices!

As for her head circumference it hasn't grown since September when she got her shunt! This is great news since it was increasing .5-1 centimeter a month.  Her head will always be larger than other kids, but since it hasn't grown, she has started to grow into it.   She is also still getting up between 9 and 15 times a night.  We finally got the go-ahead from neurology and her pediatrician to begin gentle sleep training, so we have been working on that the last month. 

 

 

 Overall she is a remarkable little girl.  Everyday she reminds me that miracle happen.  A year ago we
were worried because her MRI showed brain atrophy, cerebral edema, and significantly enlarged

ventricles...or in laymens terms--her brain "shrank" (or stopped growing briefly while on ECMO) and fluid took the place of brain matter.  She had brain damage.  A year ago we didn't know what the future would hold, we didn't know if she would meet milestones or to what extent the damage would impact her development.  But today, at 16 months old, I think it is safe to say that Makenna is not willing to let anything hold her back.  She's a survivor.  She's a fighter.  And she is going to do great things.

Height:  31 inches

Weight:  21 pound 9 ounces

Eyes:   Brownish-green

Hair:  Light brown, getting CURLY, and still long!

Clothes:  Size 12 or 18 months

Diapers:  In undies all day and cloth or size 4 at night!

Food:  Still loving her mommy milk! She also likes noodles, turkey (most meat really), quinoa, rice, gnocchi, watermelon, and bread.

Sleep:   Still getting up MANY times a night. 

Shoes:  Still fits size 2 shoes!

Favorites:   Makenna loves Sadie, flash cards, books, cleaning, and her treasure boxes.  Also loves exploring cabinets, going on walks, nursing, and playing outside.

 

 

All About Makenna: 13/14 Month Update

Makenna is officially 14 months old!  It amazes me how fast my baby is growing up.  In fact, some would even classify her as a "toddler" now!  How is that possible?

You may have noticed that I skipped her 13 month update.   That is because thankfully her 13th month of life was so uneventful that an update wasn't really necessary!  Literally nothing changed that month...which is fine by us! It is refreshing to get a little break from "crazy" every now and then.  We were happy that she just continued getting better and stronger at everything she had been doing.  That alone was enough to thrill and impress us everyday.



Month 14 on the other hand has been far more eventful.  It had it's share of ups and downs, but the best thing about this month was the fact she hit a special milestone---moving!  She still can't roll or crawl, but my clever little sweetie has mastered the booty scoot!  It is so wonderful seeing her scoot around and she is enjoying that fact she can finally go where she wants to go.  It has also brought the stress level in the house way down.  Before it was impossible to get things done around the house because it meant Makenna had to sit in the same spot for the entire time we were working.  She couldn't move unless we moved her, couldn't play with new toys unless we gave them to her, and let's face it, no 13 month old is going to be happy in that situation.  So she was getting increasingly fussy as time went on.  It's not like a 5 month old who can't crawl/roll/move, 13 month olds have desires and wants.  Their minds are programmed for exploration and independence, they don't like staying still!   So basically to do anything around the house I pretty much had to carry her around with me or listen to her crying and whining until I could come back and "recuse" her from her isolated boredom.  It was exhausting for both of us, and Rex too since he had to come home from a long day at work and do all the chores I couldn't do while holding and entertaining a baby.  But now it's so much better.  While I periodically get things done she can scoot around, moving from toy to toy.  She is enjoying the Christmas tree and we even turned the office into a playroom, so now she has more space to spread out!  Physically she is also getting stronger.  She can stand up while holding onto toys for short periods of time and if she is seated on the edge of a step she can usually lift herself into the standing position.  She can't standup on her own though, so when she does this I have to be there to catch and support her before she tumbles. One thing we also noticed this month is that Makenna gets unusually upset or scared when she tumbles over.  She isn't like most babies that shake it off and keep going.  If Makenna tumbles, falls, or bumps into anything, she completely breaks down into hysterics to the point that she has trouble catching her breath and is difficult to console.  She likes to be in control of her movement at all times and if looses control, even for a second, she is overcome with panic and fear.  We are working in PT on desensitizing her to the fear of falling because it is really holding her back from learning to stand, creep, crawl, and walk.  She also still can't go from laying down to sitting up, so this is also something we are working on in PT.

 

Another physical thing that has changed over the last two months are her teeth!  On her first birthday she had her bottom two teeth.  A week later her 3 back molars cut through, and then a week after that she got her front left tooth (6 teeth total).  Leave it to my silly girl to get her back molars before her front teeth!  Since 13m she hasn't gotten any new teeth, but I can feel another round of 3 about to cut through.





Fine motor skills continues to be one of her strengths.  She gets better and better at playing with toys each day.  It amazes me how quickly she learns to use each new toy she's given (playing the xylophone, throwing balls, hugging babies, pushing buttons, etc).  She loves to "read" stories and pretty much chooses books over toys every time.  Now that she can scoot, I often I will find her sitting on the floor with a book "reading" out loud to herself, turning pages, and pointing to the pictures.   She has delays with many OT type skills though, so they decided to begin giving her occupational therapy once a week.  This will help her learn to put objects in buckets, stack blocks, drink from open cups, use crayons and utensils, and those sort of things.


Communication during month 13 seemed to come to a screeching halt.  She stopped saying all of her words (including mama) and signs.  She continued to babble and make noises like crazy, but would just whine or point much of the time.  It was really worrying me, but my mom and her physical therapist both said that that often happens when kids are focused on another area, such as gross motor skills.   Thankfully they were right and now that Makenna is scooting she is back to talking again.  She can say mama, mom, hi, hey, and go.  She can also sign want, more, all done, I don't know, and hi/bye.  They have also decided to up her speech therapy to weekly now to help her continue to expand her vocabulary and learn to drink water without choking.  Makenna also genuinely communicates love now.  She loves to give spontaneous kisses and hugs (without being asked) and will often blow kisses when asked.  She gets exciting when her daddy comes home from work, and loves to FaceTime with her Grammy and Papa each night. She also constantly points to the door and says "go."  She loves getting out of the house to go shopping or for walks and has started to handle being in the car a lot more for short periods of time because she realizes it means we are going somewhere.  Makenna is also a very headstrong little girl, she already knows what she wants and doesn't like being told not to do something (when she is told "no" she will often look at you and scrunch her nose in dissatisfaction); however, she will almost always comply when we tell her to keep her hands off or not to do something.  She really just has the sweetest most sociable little personality.  She is a very loving and gentle baby.  She is also very sensitive to the feelings and emotions of others.  She makes friends everywhere we go and continues to inspire others.  She is also very calm and gentle towards things.  She doesn't hit, push, or pull things, but rather approaches everything in a sweet rather delicate fashion, I even let her play with regular (non board) books and my pop-up books because she is so gentle. 

Medically this was also a busy month!  She is still not sleeping through the night and wakes up every 30-60 minutes all night long. Most nights she goes right back to sleep after a wake up, but a couple nights a week she will stay up for 3-4 hours straight in the middle of the night.  In hopes of figuring out what is going on, she and I spent the night at the child neurology center several weeks ago.  They hooked her up to their electrodes and did a sleep study to analyze her brain waves and breathing while she sleeps.  We haven't gotten the results back yet, and the anticipation is killing me.  Part of me hopes they find a reason so that we can fix it and sleep better, but at the same time, I really hope there isn't a neurological reason.  Kids with hydrocephalus are prone to seizure in their sleep and also sleep apnea, both things I hope we don't have to deal with.  I hope we can eliminate both of those and discover it's just a bad habit she will grow out of!

This month she also had an allergy scratch test to officially determine if she is allergic to anything.  From that test we discovered she is pretty much allergic to everything.  Her list of allergies includes dairy, soy, corn, wheat, eggs, carrots, and apples.  We know she has severe reactions to milk and moderate reactions to carrots, apple, and soy, and she's never had egg...so we are avoiding all of those; however, corn and wheat we are just monitoring to see if she has any reactions.  So far she hasn't.  The pediatrician said to just continue allowing her to have them until her body tells us she shouldn't.  Fingers crossed it never will.  We have been limiting the amount of corn she receives though by not giving it to her directly.  She might have a little corn starch in a waffle or something, but we aren't giving her actual corn.  It's been a challenge to find a variety of toddler appropriate meals that fit within her diet parameters.  She is a little bit picky about texture and that really complicated things further.  She doesn't like to eat things that are too slimey such as bananas, peaches, and pears. She also won't use her hands to eat anything that would typically require a spoon, such as chili, mashed potatoes, or stews, so since refuses to allow us to spoon feed her, all of those food typically go uneaten.  Thankfully she is doing great for weight and getting the nutrition she needs.  We are working on teaching her to use a spoon, so once she gets the hang of that it should open up more options.

This month we also had another medical scare that landed us back in an ambulance on the way to Gainesville.  Makenna had been a bit more fussy than usual all day and went to sleep at 5:30pm (instead of 7).  She slept until 9 (3.5 hours straight..absolutely unheard of for her) and then woke up screaming.  I tried everything to calm her down, but she refused to nurse and didn't want to cuddle or anything.  As I began walking her around the house her body got really stiff and she refused to bend her legs at all.  I remembered that stiff joints, being irritable, and sleeping more than usual were all signs of a shunt malfunction, so I tried calling Shands on-call neurosurgeons.  I guess it was a busy night (the Tuesday before thanksgiving) because I couldn't get anyone to answer (that's never happened before).  So we decided to take her to the emergency room.  We went to get into the car and discovered that the key was missing and the spare didn't work...so her carseat was locked in the car.  We spent 30 minutes searching for the key, and as we did her screaming got louder and louder.  Finally we gave up on the keys and called an ambulance to take us to the hospital.  As soon as they arrived she started throwing up, another sign of a shunt malfunction.  By 10:30 we were at the hospital and my poor baby, still screaming, was being poked and prodded once again.  Two blood draws, a urine cath, and a CT scan later, the small country hospital had done all they could do.  The CT scan showed she had "marked hydrocephalus" but the radiologist they use in Tampa couldn't see her previous scans and had know way of knowing if the marked hydrocephalus was Makenna's normal or if it meant there was a problem with her shunt.  So they called Shands and Shands said they wanted to see her.  We were great with that because we love it there and if anyone is going to be entrusted with our child's brain, it's them.  Unfortunately rainy weather made it impossible to fly to Shands, so we had to spend the night in triage at the local ER until an ambulance was available the next morning.  10 hours later we began the 5 hour drive to Gainesville.  Thankfully though by morning she seemed to be getting better.  She wasn't crying, but she also still wasn't bending her legs.  Anyway, once there, after another excruciating blood draw and unsuccessful IV attempt, they determined her shunt was functioning properly.  They decided not to admit her because of all the germs in the hospital and instead asked us to spend the night in town and monitor her ourselves.   We don't know exactly what happened, but thankfully she is doing fine now.  Either way it worked out because we were able to spend the day before Thanksgiving with some of the people we are most thankful for!  Thanksgiving day we drove home, stopping to eat our Thanksgiving dinner at the same Ruby Tuesdays we went to on the way home from our consultation visit with Dr. Kay's while I was pregnant.  We might not have had the feast we planned for that day, but it didn't matter because we have Makenna.  The last time we ate there, there was a 50/50 chance we'd never get to experience sharing a meal with her, the future of our family was so unknown, yet here we are!  14 months and 14 trips to Gainesville later...eating together as one little happy family!  There may be a lot of bumps along the way, life may be super crazy, but we are blessed beyond belief.

 

Height:  31 inches

Weight:  21 pound 4 ounces

Eyes:   Brownish-green

Hair:  Light brown, getting thicker, and shockingly long!

Clothes:  Starting to be too be to tall for 12 month pants.

Diapers:  Still using cloth, but she fits in size 3.

Food:  Still loving her mommy milk! She also likes noodles, turkey (most meat really), gnocchi, watermelon, and bread.

Sleep:   Still getting up many times a night. 

Shoes:  Her feet are 3.25 inches long.  She fits size 2 for length, but her feet are too chubby for them.  Size 3 are way too big and mostly all fall off. 

Favorites:   Makenna loves her baby dolls, balls, "little people," and things she's not supposed to have (cell phones, remotes, pieces of paper, etc.)  Also loves books.